The internist couldn't find new meds to control the pain.
The neurologist was out of ideas for treating it.
And Carol the Physician's Assistant to one of the finest neurosurgeons in the world at Johns' Hopkins Trigeminal Neuralgia center was at her wits end.
Finally, Carol arranged for Jonny to be admitted into Hopkins in Baltimore, for IV pain relief and in the hope that once the surgeon eyeballed him in his out of control pain, he would find a slot for emergency brain surgery (MVD) which hopefully would relieve pressure on the trigeminal nerve. (See Brainstorming for Jonny's experience in hospital and first weeks at home.)
So began a stay in hospital for Jonny that stretched over 2 weeks, with a 6 hour brain surgery in the middle.
It was a stay full of complications and little rest. A time of great fear and huge pain, both emotional and physical.
It takes very little time to become institutionalized in a hospital. You have no idea of time or day. You are woken repeatedly 24/7 for vital signs checks, food, blood work and neurological updates; none of which are coordinated. There is little privacy, lots of noise and many, many people involved in your care. You have little control over your personal space, the timing of people's visits and your environment.
A hospital is not the place for rest and recuperation.
But some preparation definitely makes the experience more bearable and comfortable.
After asking my friends for their ideas, here combined with our experience is a list of the top ten tips that made a difference to many patients who spent more than a couple of days in hospital.
1. Forge a relationship with a medical professional in the hospital who can act as your point person. You will interact with so many different personnel who may or may not have read your medical notes. You need one person to ask all your questions to and follow through on your care. This person can be very difficult to find but can make a huge difference to your in patient care and experience.
The wonderful physician's assistant I mentioned earlier, was ours. We had Carol's direct email and phone number and I called her many times over the 2 weeks to help sort out miscommunications. She was a life-line for me as caregiver as much as for Jonny as patient.
2. Have an advocate by your side as much of the time as possible, taking notes, particularly to make sure the meds you are getting are correct. Have a list of your medications with you and keep your internist/GP up to date on your situation. After surgery as Jonny was moved from the ICU to the neurological ward one of his regular meds was dropped off the list and we did not discover it was missing from his regimen for 4 days, resulting in needless side effects and discomfort.
3. Bring home comforts such as
- your own pillow with a colored pillowcase so you can spot it easily to take home again
- warm socks/slippers - hospitals can get cold
- your favorite blanket and one for your caregiver- cosy and homey
- Your own pyjamas.
- Changes of clothing and underwear and a laundry bag
4. Bring in your favorite food/snacks that will nourish you and you can eat in your own time. Ask for a fridge. Hospitals often have some they can bring to your room if you request one.
For our cups of tea, milk was vital and the fridge was great for storing it and the sandwiches my mom lovingly made for us, that I brought from home every day. I also made cups of English tea for the nurses which they loved and offered them English chocolate! Appreciating their care and thanking them is more than worth the trouble.
5. *Bring your own toiletries -deodorant, lip balm, moisturizer, shower gel, make up, dry shampoo. (and electric razor for men so that they can shave in bed.) and your own bath towel if you would like one that actually fits all the way round your body!
6. Bring reading and writing materials for both the patient and caregiver. Magazines, puzzles books and short articles are good because of all the interruptions and things that make you laugh-because laughter really does help with the stress. We asked our friends to email us jokes and funny stories and one dear friend from the UK emailed Jonny a daily update he called, "The Daily Cannon"- with a short video clip, a piece of music or amusing news item.
7. Bring all things electrical that help keep you in touch with the outside world via email, Skype and Facebook as well as phone:- cell phone, Ipad, laptop and REMEMBER THE CHARGERS and earphones for privacy and comfort (yours and others')!
8. Have your favorite music/ movies/ meditation guide - each or all of these can be soothing, stress reducing and provide relief from the hospital malaise and ear plugs if you want to drown out noise or the patient in the bed next to you.We found a great free meditation app on Itunes to download called Simply Being.
9. Ask a companion to support the caregiver and hear instructions. This is particularly important if you are not in a fit state to take in the information. My friends supported me as I advocated for Jonny. They also helped me manage the flow of visitors and information to family and friends. On the day of discharge a doctor friend kept me company while Jonny slept, helped me pack up the room and also heard the discharge instructions. I could not have got through that day without him.
10. For caregivers:-If you do not think your loved one is ready to be discharged do not be afraid to say so, particularly if you will have the responsibility for caring for them at home. Hospitals want to discharge patients as quickly as possible to avoid infection (admirable) and to free up the room for another surgery (not so admirable).
You know the patient better than anyone. If you do not think they are ready to come home, speak to whomever is the hospital point person you have the best relationship with (see tip no. 1) and ask them to assess the situation.
And finally when you get home and you have your own bed and bathroom back, manage your expectations about your recovery. Be kind to yourself as patient and caregiver . You have been through an ordeal and coming home is the beginning of a new stage of recovery not the end.
|All pictures taken from get well cards Jonny received|
What would be your top tip for someone spending time in hospital? Please leave a comment below to share and help others.
You may also be interested in the posts:-
Caregiving - part 1
What Does Recovery Look Like?-part 3
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* Be aware that strong perfumes may irritate other patients due to allergies or asthma so be sensitive to others sharing your environment.
**Taken from The Johns Hopkins Website
"Trigeminal Neuralgia is an extremely painful condition usually involving one side of the face. It usually occurs spontaneously. It has a characteristic feeling of “shock-like” pain which travels through the face in a matter of seconds, but can occur in a repetitive fashion. Sometimes it is triggered by specific things ,mostly it starts and stops for no reason and an episode can last from minutes to hours at any one time.
The intensity of the pain is exceptional, and it is felt to be more severe than experiencing a heart attack, passing a kidney stone, or even having a baby. There is no other pain quite like this.
Trigeminal neuralgia can be very active for a time, and then seem to disappear, sometimes for long periods, but always recurs later, often with more intensity. We also know that the most commonly accepted theory of what causes trigeminal neuralgia is vascular compression. There are blood vessels that travel with the nerve, and if they cause pressure on the nerve or irritate it, pain can occur.